Era of the Death Sentence: Our AIDS Legacy

Remembering Ryan White and the millions of gay men who died during the darkest days of our AIDS crisis

By C.L. Frederick
Contributing Columnist
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C.L. Frederick

It’s easy for the LGBTQ community to forget the past, since we are always looking forward and breaking down the societal barriers that have held us back for eons.  I for one have been guilty of forgetting our past struggles for the sake of moving our community forward socially and, in all honesty, because I never believed our history applied to my life.

Then I was diagnosed with HIV. That was certainly was expectedly a life changing experience, but it also changed the way I looked at the gay community.  Stories from our past became my saving grace.

I found myself being re-introduced to the era of the death sentence and I realized that I owed a debt of gratitude to those who came before me during the early days when medicine and treatments were not advanced enough to save lives, those who died during the time when HIV/AIDS was looked at as the “gay disease,” when hate and ignorance were mixed into one’s fight to live.

I was just a boy when AIDS began to enter the public consciousness, and I acutely remember hearing news reports and adults in my life discussing this “gay epidemic.” I just wanted to know why so many people were dying and why people on the news and the grown-ups I respected lacked sympathy for them.

I picked up on the vitriol being spewed at gay men with HIV/AIDS and it was jarring for me. News reports on TV seemed to shame these men and I was confused as to why that was. Then a few years later I heard about a boy named Ryan White who acquired HIV/AIDS through a blood transfusion.

He was a boy close to my age and I found myself paying attention to his story.  He seemed so strong and was so well spoken.  Here was a boy fighting for his life, growing gravely ill from his disease and treatments, a boy who encountered a great deal of hate and ostracism from all over the country because he wanted to simply go to school and be a part of his community.

Such hostility aimed a boy who did nothing to deserve the social prejudice added to his fight to live!

I could identify with Ryan and I continued to follow every bit of information concerning his journey as a youth with AIDS. This was not an interest that I could share with my family or friends, but my soul was rooting for him.

Ryan did not survive his fight against HIV/AIDS and when I learned of his death I was quietly heartbroken. Ryan’s life was quite possible the first human interest story to have an impact on my own humanity.

The years following Ryan White’s death saw HIV/AIDS treatments advance and prolong lives.  I began to come into my own as a gay man and started to forget about those who had died. People with HIV/AIDS were living longer and issues like LGBTQ equality and gay marriage were on the cusp of national and worldwide attention.

I would think of Ryan’s life from time to time, but I failed to realize how globally impactful his story was and should continue to be.

After learning I was HIV-positive, I found myself searching for stories to relate to, stories to comfort me in my time of need.

One night I watched the HBO movie The Normal Heart, and I was reminded of the struggles gay men with HIV/AIDS dealt with at the onset. I don’t cry much, but watching the movie was an emotional rollercoaster for me.  I have never been moved to that extent or cried so much because of a film.

To be reminded of those who came before me was a painful and humbling moment. The cards were stacked against them during that time: medications that would put a body through hell, men fighting to live only to be beaten down by society and ignorance in the process, and the fact that most knew they were dealing with a death sentence.

I am able to live a fairly normal life as a positive man today because of their voices, their fight and their bravery to live in the face of so many painful obstacles constantly working against them. Living with HIV/AIDS today still has its challenges. It is still a mountain of obstacles to overcome to remain healthy and get access to medications and treatment.

But the fact is that I only deal with a fraction of the challenges that those who came before me encountered. We have lost millions of voices that could have told us billions of stories. And I can’t help but think how different life would be today if we never had to lose any of those men.

What plays would have been written? What art created? Would one have become our first gay president? Was one my soul mate?

I get to live today, but I fully realize that all who have died of AIDS deserved to live just as much as I do.  I will never again forget the legacy of Ryan White and the men who came before me.

—  Tammye Nash

Log Cabin Republicans announce support for HR 4260

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U.S. Rep. Renee Ellmers

Log Cabin Republicans announced today its support for the Ryan White Patient Equity and Choice Act, introduced in March by U.S. Rep. Renee Ellmers, R-N.C.

The bill, aka HR 4260, is intended to ensure appropriate allocation of funding for the Ryan White Comprehensive AIDS Resources Emergency Act program. Tim Boyd, director of domestic policy for the AIDS Healthcare Foundation, told Dallas Voice in April that the bill would shift funding to account for the rise in infection rates in areas and populations “that didn’t get prevention messages before” especially in the South.

U.S. Rep. Eddie Bernice Johnson, D-Dallas, is one of the co-sponsors of the bill, and Dallas HIV service providers — such as AIDS Services of Dallas (led by CEO Don Maison) and Resource Center (led by CEO Cece Cox) — support the legislation, too.

Log Cabin Republicans Executive Director Gregory T. Angelo said today that HR 4260 would “help hundreds of thousands of Americans with HIV obtain better or first-time care. Furthermore, this bill will continue to fund groundbreaking research that will help eliminate the spread of HIV and save countless lives in the future.”

Angelo said Log Cabin “commend[s] Congresswoman Ellmers for her leadership” on HR 4260 and called on members of Congress of both parties to work together to get it enacted.

Ellmers said she is pleased to have Log Cabin’s support, calling the organization’s backing “an important endorsement [that] speaks volumes for the bipartisan support this bill continues to gain … . I will continue to work with my colleagues to quickly move this bill through the House of Representatives.”

Log Cabin’s press release cited statistics saying there are about 1.2 million Americans living with HIV/AIDS, but that 20 percent do not know their HIV status and only 40 percent see a medical professional on a regular basis. Another 70 percent “are capable of spreading the virus,” the press released said.

 

 

—  Tammye Nash

HHS announces 2013 Ryan White funding

HHSThe Department of Health and Human Services on Tuesday announced its 2013 Ryan White funding for critical HIV/AIDS health care services and medications. A total of $594 million in Part A funding was awarded to 53 cities for medical and support services.

Dallas was awarded $ 14,324,000. Fort Worth will receive $ 3,653,145.

The Metroplex did not do as well as other comparable metropolitan areas.

Smaller cities such as Atlanta will receive $ 21,483,214, and Fort Lauderdale was awarded half a million dollars more than Dallas.

Elsewhere in Texas, Houston was awarded $19,750,043, San Antonio $4,309,561 and Austin $4,024,795. El Paso does not receive Ryan White Part A funding.

The money goes to area planning councils that divide the money among AIDS service organizations and county facilities such as Parkland Hospital.

Part B funding is awarded to states for the AIDS Drug Assistance Program. Texas will receive $83 million to ensure those with HIV who have no insurance to cover the cost of medication will receive necessary drugs. Only New York and California received more funding than Texas. This money helps people with HIV who need drug assistance throughout the state.

Part C funds are granted directly to organizations that provide comprehensive primary health care in outpatient settings to people living with HIV. In Texas, 10 providers were granted money. In Dallas, AIDS Arms will receive $315,875. The Tarrant County Health Department and Dallas County Hospital District each will receive more than $800,000.

—  David Taffet

Resource Center’s Cece Cox attends White House ‘fiscal cliff’ meeting

RCD CEO Cece Cox, right, at the White House with Texas ACLU Executive Director Terri Burke.

Resource Center Dallas CEO Cece Cox is in Washington, D.C. today at a meeting called “Working together to avoid the fiscal cliff” with about 70 other community leaders from Texas.

The main issue of concern is money for HIV/AIDS programs. Should automatic cuts go into effect, Ryan White money and programs would be affected. An automatic 9 percent funding cut would also affect HOPWA and ADAP programs. HOPWA is housing money that could impact AIDS Services of Dallas and other programs that subsidize rent. ADAP pays for HIV medication for those who cannot afford it.

“When it comes down to people’s lives, there should be no compromise,” said RCD Communications and Advocacy Manager Rafael McDonnell. “These monies are priorities for people living with HIV, and we should be mindful of how important these programs are to members of our community.”

More than 14,000 people in Texas receive their medication through the ADAP program. About 1,300 people could be removed from the program with an automatic funding cut.

The meeting was called by the White House Office of Public Engagement. The White House has been meeting with corporate and civic leaders all week to put pressure on Congress to reach a compromise on taxes and spending.

—  David Taffet

Legacy offering walk-in clinic year-round

From Staff Reports
editor@dallasvoice.com

Legacy Counseling Center experienced such success with the walk-in mental health/substance abuse clinic the center offered during the holidays, Legacy has decided to make the walk-in clinic a permanent addition to the center’s services, Executive Director Melissa Grove announced this week.

The counseling center is located in the Uptown area, on McKinney at Elizabeth Street. Walk-in hours are 9 a.m. to 4 p.m. Mondays through Thursdays, and 9 a.m. to noon on Fridays.

Any HIV-positive person who comes to the clinic during those hours will be seen by a therapist and can start services immediately, Grove said. She added that it would be helpful if someone planning to access the clinic could call in advance to let center personnel know they are coming and what time they expect to be there.

Legacy accepts Medicaid, Medicare, Ryan White, Northstar and private insurance, while utilizing various community grants to cover the cost of counseling. But, Grove added, “No one will be turned away who needs our care.”

Legacy has been offering counseling services to HIV-positive individuals for more than 22 years, and has “highly experienced licensed therapists who are experts in dealing with mental health and substance abuse issues, and the unique challenges faced by those who are HIV-positive,” Grove said. The center offers individual, couples, group and family therapy and a variety of outpatient programs for those dealing with substance abuse issues. The center also offers psychiatric services to all its clients and free HIV testing twice a month.

The Legacy Counseling Center Crisis Line, available 24 hours a day, seven days a week, is 214-207-3953.

This article appeared in the Dallas Voice print edition January 13, 2012.

—  Kevin Thomas

What’s next for HIV/AIDS services?

With drastic budget cuts looming, federally-funded HIV/AIDS treatment, prevention and education programs could be lost completely

Phyllis Guest
Taking Notes

On Dec. 15, four HIV/AIDS policy, planning and treatment groups offered a webinar entitled “Is No Deal a Good Deal? Deficit Reduction, HIV Services and What Comes Next.”

Experts from the AIDS Foundation of Chicago, AIDS United, Harvard Law School Center for Health Law & Policy Innovation and the Treatment Access Expansion Project took turns speaking about different aspects of the challenges HIV/AIDS service providers face in light of political realities in DC. They divided their presentation into four parts and used 50 illustrative slides.

Part 1 was the overview: Deficit Reduction and the Budget Control Act of 2011.

So why does the U.S. have a deficit when, as George W. Bush took over the White House in January 2001, the federal government had a surplus of more than $237 billion? The answer is a trifecta: Bush-era tax cuts (“It’s your money!”), war in Afghanistan (“Gotta get al-Qaida!”) and war in Iraq (“Weapons of mass destruction!”). Thus, in a single decade, we went from the largest surplus in U.S. history to the largest deficit.

The fiscal woods thicken here, so let’s just note that Congress has passed and the president has signed the Budget Control Act of 2011. The act pledges the federal government to sharply reduce the deficit over the next 10 years.

What will such deficit reduction mean for HIV/AIDS programs? According to the webinar presenters, if there is no agreement on revenue increases and the deficit reduction comes solely through spending cuts, it will severely impact three programs of interest to many of us: Ryan White, prevention funding and two so-called entitlements, Medicaid and Medicare.

­THEN AND NOW  |  When George W. Bush took over the White House in January 2001, the federal government had a budget surplus of more than $237 billion. In 2011, the deficit stands at $1.3 trillion.

­THEN AND NOW | When George W. Bush took over the White House in January 2001, the federal government had a budget surplus of more than $237 billion. In 2011, the deficit stands at $1.3 trillion.

A spending-cuts-only approach would affect the HIV/AIDS community in several ways. First, cutting prevention efforts would mean higher rates of infection, worse health outcomes and higher long-term health care costs.

Since Medicare and Medicaid help millions living with HIV/AIDS, cutting the former would likely cause more physicians to drop Medicare patients, and cutting federal funds for the latter would shift the cost to treat very low-income persons to the states. (Good luck with that, Texans.)

Cuts to general health care reform efforts would virtually assure higher costs going forward.

Still with me? Good.

So when the Congress and President Obama could not come to any fiscal agreement, they punted to the Super Committee. The Super Committee was tasked with recommending huge changes to taxes, entitlement programs (including Social Security, Medicare, Medicaid) and discretionary spending (including Ryan White).

The SC came up with nothing. Nada. Zilch.

That means there will be no immediate spending cuts to entitlement programs. But automatic spending cuts  — sequestration — will kick in January 2013 for both defense and non-defense programs.

According to the nonpartisan Congressional Budget Office, without new revenues, domestic spending will drop from about 4.4 percent of Gross Domestic Product this year to about 2.7 percent in 2021. It will then be much lower than it has been since the end of WWII.

Looking at appropriations for the year we’re entering now, suffice it to say that the differences between what the HIV/AIDS research and health care community is seeking and what the Congress is proposing are huge.

Also, the community “vehemently” opposes two policy riders added by Republican members of Congress. The first bans the use of federal funds for syringe exchange programs. The second funds abstinence-only programs.

The webinar ended with a plea for advocacy. Here are the talking points the experts hope we will use:

• The Super Committee actually succeeded in one area: It prevented major cuts to Medicare, Medicaid, Social Security and other essential programs.

• The president and Congress must stick to their promise to cut defense and non-defense spending equally; no caving to deep-pocketed militarists.

• New revenue is essential; without it, HIV/AIDS outreach, prevention, education and treatment programs are lost.

• Preventing new HIV/AIDS cases, providing early treatment for those who do get infected, and funding support services such as housing are not just humane; they are cost-effective.

HIV/AIDS is still running rampant, and no magic cure is in sight. Call, fax, email and snail mail every member of Congress as well as the president.

Work with other activists. Think of other things to do, and do them all. Jan. 2 is not too soon to begin.

Phyllis Guest is a longtime activist on political and LGBT issues and is a member of Stonewall Democrats of Dallas. Send comments to editor@dallasvoice.com.

This article appeared in the Dallas Voice print edition December 23, 2011.

—  Michael Stephens

We are ‘greater than AIDS’

A LOOK BACK | Elton John, right, is joined by Ryan White, left, and Jason Robertson, both suffering from AIDS, as he performs at “For the Love of Children” benefit for children with AIDS and other serious illnesses in 1988. (Alan Greth/Associated Press)

As LGBT community grows more complacent, HIV infections in gay, bisexual men continues to rise

DAVID FURNISH  |  Special Contributor

This year marks 30 years since the discovery of the first case of what was later identified as AIDS. With that news, our lives and relationships as gay men were forever altered.

We witnessed an unthinkable tragedy that has taken the lives of more than a quarter million of our gay and bisexual friends and lovers.

In the face of this devastation, leaders emerged. The crisis helped to shape our community’s political agenda, and it provided a platform around which gay leaders could advocate for rights and equality. We realized that if we informed ourselves and acted on what we learned, we could be greater than the disease.

Thanks to the efforts of gay men and our allies, our community saw a dramatic decline in new infections by the late 1980s. Many of us can look back with immense pride at the collective response in those early years.

The availability of effective combination drug therapies in 1996 fundamentally changed how we thought about HIV. No longer was HIV the death sentence it had once been. We had new hope. For many, HIV was a manageable chronic disease.

Many of us turned our attention to marriage equality, adoption rights, the repeal of “don’t ask, don’t tell” and other pressing issues facing our community. While we broadened our focus, AIDS did not.

When we become complacent, HIV thrives. New HIV infections among gay and bisexual men in the United States are on the rise. Yes, on the rise.

We are the only risk group for whom this is the case. According to a recent study by the Centers for Disease Control, one in five of us — that is, gay and bisexual men — in some of the largest U.S. cities today are living with HIV. And half of those who are positive do not know it.

Unless we act now, we will see these numbers rise even higher, and quickly.

My partner, Sir Elton John, often talks of his friend Ryan White, a boy whose tremendous courage in the face of AIDS forced our leaders to take action and inspired many of us. Today, Ryan’s story continues to remind us that just as HIV began one person at a time, it will end one person a time.

Elton and I recently had a baby boy. Becoming fathers has given us new perspective on what it means to take care of one another — as parents, as partners and as members of a community.

And, it reminds us that we cannot be complacent in helping to create the kind of society in which we want our son to grow up. In short, we must take responsibility and each do our part to create a future free of HIV, by being informed, using protection, getting tested and treated — and by getting involved.

And so, as we mark 30 years of this disease, Elton and I have recommitted ourselves to being greater than AIDS. As chairman of the Elton John AIDS Foundation, I’m proud of the community organizations with which we are working to fight stigma and prevent the spread of the disease. And I’m proud that leading LGBT companies — like HERE Media, LOGO TV and Dallas Voice — are refocusing attention on this epidemic. And I hope more will join us.

As a community, we once showed that we could be greater than AIDS. Now is our time to do it again. Visit GreaterThan.org/pride to get started.

David Furnish is Chairman of the Elton John AIDS Foundation (EJAF.org). The Elton John AIDS Foundation is a supporting partner of Greater Than AIDS (GreaterThan.org/pride), a national movement organized in response to AIDS in America with a focus on the most affected communities. Columnist photo courtesy Richard Leslie.

This article appeared in the Dallas Voice print edition March 4, 2011.

—  John Wright

LSR Journal: Because they still need us

ROBERT MOORE  Team Dallas Voice

Robert Moore Team Dallas Voice
ROBERT MOORE Team Dallas Voice

I left the office and went out for lunch today.  Not an uncommon occurrence. I go out almost every day. The biggest challenge I have before I leave the building is deciding where to eat. Dallas is a restaurant town, you know.

Where to eat? How much to spend? How far to travel? How much time do I have in my schedule today? So many decisions to be made just for a simple lunch.

Not today.

Today I had lunch with Jennifer Hurn, the client services manager for Resource Center Dallas, one of the beneficiaries of Lone Star Ride Fighting AIDS, along with AIDS Services of Dallas and AIDS Outreach Center of Tarrant County.

I had called Jennifer and told her I was riding Lone Star Ride this weekend and I wanted to meet some of the clients at the Hot Meals Program, which she oversees. Ultimately, when you are holding out your hand and asking people for money to support a cause, your cause, you want to know and see that the money they hand over to you is doing some good.

The RCD’s Hot Meals Program serves between 100 to 150 clients every weekday. Today’s menu was barbeque chicken, green beans with potatoes, garlic toast, a salad, plus cake for those, like me, that have a sweet tooth.

To be eligible for the meal, a client must be HIV-positive, have an income at or below 300 percent of the poverty level and fall under Ryan White funding.

“We see some people once a week and some every day,” Hurn explains. “The numbers always go up at the end of the month when the social security money starts to run out. Always. We have a total of over 900 clients who are eligible for the meal.

If they all showed up on a single day, I don’t know what we would do.”

Jennifer doesn’t want to face that prospect and I understand her fears. Most of the chairs are taken.

After going down the serving line, we sit down with Edward, a longtime client. Edward lives in Oak Cliff and takes the bus on his daily trip to RCD. The journey takes him an hour-and-a-half to two hours each way.

“I have been coming here for years. I’m an old-timer at this place. Plus I’m 60 years old,” he says, shaking his head with a grin, something of an acknowledgment he didn’t expect to be around this long. He notes that while the trip is onerous because he walks with a back brace and the help of a cane, he looks forward to it.

“If I don’t come here I may not see many people. I try to get to know people, especially the new folks who may not be comfortable at first.” Edward is the welcoming voice closest to the serving line.

While Edward holds court, Jennifer and I change tables to meet some of the other diners. Rick and Mike are longterm AIDS survivors.  Rick became positive in 1997, Mike in 1987.

They both were successful businessmen who held professional jobs and never expected to be clients of a non-profit like Resource Center, but HIV has taken its toll and neither are able to work. Now, they live together to look after each other, have some company and help with living expenses.

“This place is important to me,” Rick states firmly. “I take a lot of medication and, well, it can make me confused,” he confides. “I really like to cook. I used to cook all the time, but now, well, many times I start cooking but I can’t finish what

I’m cooking. I don’t remember what to do next so I just give up. But then the medicine makes you sick if you are not eating.

This lunch solves a lot of problems for me.”

Rick looks straight at me, and I realize that he is about to say something he hates to admit: “Plus this place gives me a reason to get up and get dressed and gets me out. If I didn’t come here I might never go outside.”

Mike nods his head in agreement. “The interaction at the table is very important. There are people going through what you are going through, or maybe you can help somebody with a problem that you had once. Maybe you can teach them about Social Security or how to make it through a day at Parkland. Living on charity is not an easy way to live.

“There are homeless people here. They can get groceries from the Food Pantry but if you have no place to cook, how are you going to eat a hot meal? At least the kids on the street can get one hot meal a day.”

Mike knows a few of the homeless kids who got sick and went back home to stay. Their parents thought they just had a sick kid, then they found out they had a gay kid too, so they just turned them out on the street. “Isn’t that wrong?” he asks in disgust.  “Is to me.”

Edward and Mike and Rick turn a few questions to me. Why are you here? Why are you taking notes? I explain that I am doing Lone Star Ride, writing this installment of LSR Journal and, most importantly, asking people for money to keep programs like Hot Meals going.

“The great thing about the ride is that it a very public statement,” Mike says. “You let people know that AIDS is still here. It’s still with me, that’s for sure.”

Jennifer asks how Lone Star Ride fundraising is going. She knows it is tough out there raising money. “Whatever you raise, we will make it go as far as possible,” she promises.

Indeed she does. For that thirty bucks I spend on a typical business lunch, Jennifer can feed an RCD client a hot lunch every weekday for a month. On thirty bucks. Amazing.

The crew and the riders who come together to make events like Lone Star Ride Fighting AIDS work ultimately are there because they want to help people like Edward and Mike and Rick, and all the clients and the programs of the three beneficiaries.

We ride for those who cannot.  I am determined to ride every mile.

As I get up to leave, Rick stands up and shakes my hand, and invites me back. I accept. I tell him we’ll share a table again. Because like Rick says, “I like going out for lunch.”

Robert Moore is captain of Team Dallas Voice. Donate to him online at LoneStarRide.org.

This article appeared in the Dallas Voice print edition September 24, 2010.

—  Kevin Thomas

Dallas ASOs win fight to keep client info off Web

DSHS wanted patient notes added to secure online server to help in audits; agencies say risk to confidentiality was too great

DAVID TAFFET  |  Staff Writer taffet@dallasvoice.com

Raeline Nobles
LEADING THE FIGHT | Raeline Nobles, executive director of AIDS Arms Inc., took the lead in negotiating with DSHS to keep AIDS service organizations from being forced to put confidential client information on an online server.

Local AIDS agencies have prevailed over a Department of State Health Services mandate to post all confidential client notes on an Internet database.

The agencies began battling the mandate after state officials claimed that ARIES, the new database, would be secure but could not provide a list of who would have access to the system to the agencies.

“That hit me like a brick,” said Don Maison, executive director of AIDS Services Dallas.

He said immigration status, incidents of domestic violence and other personal information would all become public. He sent his staff for training on the system but instructed agency employees not to enter any information.

Bret Camp, associate executive director of health and medical services at Nelson Tebedo Clinic, said, “We have information available for review. We will not be entering information in ARIES.”

Dallas County sided with local AIDS service providers. After almost a year of negotiations, the state compromised and will allow agencies to provide the data needed by the state without posting confidential notes on line.

The only objections to using the system came from Dallas.

Raeline Nobles, executive director of AIDS Arms, said all agencies funded by Ryan White Part B money in Texas would be affected.

Houston doesn’t receive this type of funding. Agencies in other parts of the state told Nobles they were too small to fight the new mandate.

That left Dallas organizations to lead the fight to protect personal information from being compromised on line.

“We were successful,” said Nobles, who led the opposition and negotiated with the state on behalf of the county and Dallas AIDS service providers.

“DSHS has come back and decided to negotiate a fair and equitable deal,” she said. “Austin has done the right thing on behalf of clients and agencies.”

The state agency told both Nobles and Maison that it needed all of the client notes to audit the agencies. They said allowing state officials to examine the agencies without traveling to the various locations across the state would save money. The state, however, pays the county to review agency records.

Greg Beets, DSHS public information coordinator for HIV/STD programs, said that the reason behind ARIES is to codify and evaluate HIV services across the state. He said confidentiality was the state’s biggest concern as well.

“The data helps provide a snapshot of what services are being provided and identify unmet service needs,” Beets said.

Beets said that the system met standards developed at a national level and a series of measures would ensure security. Those measures included limited access to the information on a need-to-know basis, security at the building in which the computer was housed and encrypted information.

Those assurances did not satisfy Dallas AIDS agencies. Nobles pointed out that from time to time information is compromised from financial institutions that spent quite a bit of money on their technology.

“If information ever got out to the public, we’d be liable,” Nobles said.

Several years ago, the state required AIDS organizations to invest millions in new computer record keeping systems. She said all of the information is currently kept on a secure computer database within the agency. That computer system is not Internet-based.

Nobles’ agency raised several hundred thousand dollars to satisfy the unfunded mandate to build their database, and, she said, Parkland spent more than $1 million on their system.

To move the information to the new state computer system would be a complete waste of that money the state required her to raise from local donors, Nobles said.

She explained she feared moving the information off the database to a state system would compromise her credibility with her agency’s donors.

“But privacy is the number one issue,” Nobles said. “We can’t build a reliable relationship with clients if they don’t believe it’s confidential.”

Maison was even more adamant.

“This agency would be in court,” Maison said. “It wouldn’t take a rocket scientist to see what this policy does to make people run from care.”

Maison said people with HIV who use public services give up quite a bit of their privacy, “But to invite the government into your daily life is not acceptable.”

Nobles said she was never arguing about the state’s right to see AIDS Arms’ records. “Any time a government public health funder needs to audit, they can do so,” she said. She said that the information the state needs is statistical information.

But, Nobles added, she couldn’t imagine what use the client notes would have been.

The state will maintain the ARIES system. Nobles said smaller agencies, especially in rural areas that could not afford their own database, might want to use it.

Maison was happy with the outcome.

“I don’t recall being on the same side as the county before,” said Maison, who has headed ASD for more than 20 years.

Camp was also pleased with the outcome. “I’m very pleased Dallas County understood the importance of client confidentiality and backed the service providers,” he said.

This article appeared in the Dallas Voice print edition August 13, 2010.

—  Kevin Thomas

President's remarks on signing Ryan White act

President Obama today signed into law the Ryan White HIV/AIDS Treatment Extension Act of 2009. Here are some of the comments he made during the signing ceremony:

“We often speak about AIDS as if it’s going on somewhere else. And for good reason — this is a virus that has touched lives and decimated communities around the world, particularly in Africa. But often overlooked is the fact that we face a serious HIV/AIDS epidemic of our own — right here in Washington, D.C., and right here in the United States of America. And today, we are taking two important steps forward in the fight that we face here at home.

“It has been nearly three decades since this virus first became known. But for years, we refused to recognize it for what it was. It was coined a “gay disease.” Those who had it were viewed with suspicion. There was a sense among some that people afflicted by AIDS somehow deserved their fate and that it was acceptable for our nation to look the other way.

“A number of events and advances over the years have broadened our understanding of this cruel illness. One of them came in 1984, when a 13-year-old boy from central Indiana contracted HIV/AIDS from a transfusion. Doctors assured people that Ryan White posed no risk to his classmates or his community. But ignorance was still widespread. People didn’t yet understand or believe that the virus couldn’t be spread by casual contact. Parents protested Ryan’s attendance in class. Some even pulled their kids out of school. Things got so bad that the White family had to ultimately move to another town.

“It would have been easy for Ryan and his family to stay quiet and to fight the illness in private. But what Ryan showed was the same courage and strength that so many HIV-positive activists have shown over the years and shown around — show around the world today. And because he did, we didn’t just become more informed about HIV/AIDS, we began to take action to fight it.

—  admin